Toddler- results help and gluten challenge

[Rebecca129]

hello all,

 

im new to this forum. My almost 3 year old has had loose bowels since weaning. He had a very poor appetite. We had some blood tests recently and found out he was iron deficient aneamic. Also his celiac screening came back as below;

 

IGA 1.940.     Reference 0.140-1.230 g/L

TTG >128.00.  Reference 0-7 u/mL

The accompanying statement suggests that a second sample of IgA Endomysial antibodies is needed before celiac is diagnosed.

 

When i seen the extremely high result for TTG i immediately took him off gluten for 6 days. However i then learned that he needs to be on gluten for the next test to be accurate.

can you advise whether this 6 days off will make a difference? We hope to have an appt for the additional blood test within the week. We are then waiting on gastro referral.
 

I understand the blood results is now enough to diagnosis celiac and biopesy not needed?

also is there any other condition this could be with the above results both being positive? Could it be intolerance or is it looking likely for celiac?

in addition, his folate, vitamin B12, vitamin d levels etc were all good. Why would celiac impact his iron absorption only? If other foods are being absorbed?

 

any advise would be helpful.

 

thank you in advance

[trents]

17 minutes ago, Rebecca129 said:

hello all,

 

im new to this forum. My almost 3 year old has had loose bowels since weaning. He had a very poor appetite. We had some blood tests recently and found out he was iron deficient aneamic. Also his celiac screening came back as below;

 

IGA 1.940.     Reference 0.140-1.230 g/L

TTG >128.00.  Reference 0-7 u/mL

The accompanying statement suggests that a second sample of IgA Endomysial antibodies is needed before celiac is diagnosed.

 

When i seen the extremely high result for TTG i immediately took him off gluten for 6 days. However i then learned that he needs to be on gluten for the next test to be accurate.

can you advise whether this 6 days off will make a difference? We hope to have an appt for the additional blood test within the week. We are then waiting on gastro referral.
 

I understand the blood results is now enough to diagnosis celiac and biopesy not needed?

also is there any other condition this could be with the above results both being positive? Could it be intolerance or is it looking likely for celiac?

in addition, his folate, vitamin B12, vitamin d levels etc were all good. Why would celiac impact his iron absorption only? If other foods are being absorbed?

 

any advise would be helpful.

 

thank you in advance

Is he on a multi vitamin? If so, that may explain why serum vitamin levels are not low but iron is.

His total IGA is quite high and so is his TTG-IGA. TTG-IGA is the most specific antibody test for celiac disease. 

Guidelines for the gluten challenge before the endoscopy/biopsy are being on normal amounts of gluten daily for a minimum of 2 weeks. The guideline for gluten challenge before blood antibody testing is 6-8 weeks of normal daily consumption of gluten. Yes, being off gluten for 6 days during that period could compromise test results. Besides that, children often don't experience villi damage as readily as do adults. Their recuperative powers are remarkable at that age.

It is true that many doctors are diagnosing celiac disease by blood tests alone these days if the test results are strongly positive. This is especially true in Europe. 

Personally, I think you have enough evidence to conclude your son has celiac disease. Did his symptoms improve during the 6 days of being off gluten? 

[Rebecca129]

1 hour ago, trents said:

Is he on a multi vitamin? If so, that may explain why serum vitamin levels are not low but iron is.

His total IGA is quite high and so is his TTG-IGA. TTG-IGA is the most specific antibody test for celiac disease. 

Guidelines for the gluten challenge before the endoscopy/biopsy are being on normal amounts of gluten daily for a minimum of 2 weeks. The guideline for gluten challenge before blood antibody testing is 6-8 weeks of normal daily consumption of gluten. Yes, being off gluten for 6 days during that period could compromise test results. Besides that, children often don't experience villi damage as readily as do adults. Their recuperative powers are remarkable at that age.

It is true that many doctors are diagnosing celiac disease by blood tests alone these days if the test results are strongly positive. This is especially true in Europe. 

Personally, I think you have enough evidence to conclude your son has celiac disease. Did his symptoms improve during the 6 days of being off gluten? 

Thank you for your prompt reply! His stools definitely got better formed in the 6 days gluten free however i cant be sure if this was  due to this because this coincided with him starting iron supplements also which could have impacted his bowel movements. I have now had confirmation that the blood test is tomorrow, is the endomysial antibodies test the one which concludes damage to the villi? I dont want to keep him on gluten any longer than necessary so after tomorrow i hope to come off gluten again. I also have a 5 month old son and am concerned that he may have it also (and maybe i do). Is it the norm to have all children tested and adults? I dont want to start weaning my 5 month old on gluten foods if he has it but equally dont want him to have unncessary blood tests etc

[trents]

I'm not sure any of the antibody blood tests actually confirm damage to the villi. My understanding is that all of them simply measure immune system reactions to threats. The function of antibodies is to attack invaders. With celiac disease, gluten triggers the immune system to marshal antibodies against the gluten and the war that takes place happens in the villi, causing chronic inflammation that damage the villi. How much damage this causes to the villi depends on many things. Time, age and personal constitutional strength being among them. 

The TTG-IGA test is considered to be the test that combines both good specificity and reasonably good sensitivity for celiac disease. Recent research, however, has cast doubt on the latter. Therefore, it misses a significant number of people who actually do have celiac disease which can be confirmed by endoscopy/biopsy. When the TTG-IGA is strongly positive, it is a strong indicator of celiac disease.

The endomysial antibody test is the most specific for celiac disease but one of the least sensitive. Frankly, I question why your physician feels a need to run more antibody tests when the TTG-IGA is so high unless he/she wants to make sure it's not something besides celiac disease that is at the heart of the problem. In my mind, he should go directly to the endoscopy/biopsy rather than run more lab tests. But I'm not a medical doctor. I do know that GI docs do not like to do endoscopies on young children unless it becomes necessary.

This might help in getting an overview of the various antibody tests that can be done to detect celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Concerning your 5 month old, there is a 44% chance of him having or, at some point in his/her life, developing celiac disease because of being a first degree relative. You and also the children's father should be tested as well. We know what genes are responsible for celiac disease but we also know that many or most who have the genes never develop active celiac disease. It remains a dormant potential until some stress event (like a viral infection) turns the genes on and this can happen at any point in life.

Edited June 17, 2021 by trents

[Scott Adams]

Welcome to the forum. Your son's extremely high positive TTG test results would likely fit into the category of not needing a biopsy to confirm a celiac disease diagnosis, and the article below has more about this. 

It is possible that the results of any blood tests done after being gluten-free for 6 days will be skewed, and might be lower than if he had been eating gluten daily, so keep this in mind when you get the results.

 

[Wheatwacked]

9 hours ago, trents said:

We know what genes are responsible for celiac disease but we also know that many or most who have the genes never develop active celiac disease

 

11 hours ago, Rebecca129 said:

My almost 3 year old has had loose bowels since weaning. He had a very poor appetite.

In 1976 my infant son had the same problems. Also had a swollen belly and was miserable all the time. Everyone was convinced it was just colic, and if my wife would just take Valium, all would be well. Eventually we found a doctor and after biopsies and such he was diagnosed with Celiac Disease He was put on Nutramagen Infant Formula for six months and had a miraculous recovery. After that a Gluten Free Diet. The doctor also recommended that we all try the Gluten Free Diet, and that we did not is the only real regret in life that I have. For starters, it sets a bad example that Gluten Free is a punishment and as soon as he was able my son started sneaking bread. The exact requirements to trigger an acute bout is not understood, but there are some 200 or so symptoms (Google it) that are either supclinical or just accepted as a part of life. My wife had endometriosis, asthma, and other allergies. Unfortunately she died from Ovarian Cancer in 2005 so we will never know if GFD would have helped. Up until 2014 I ate gluten. In 1973 I was diagnosed with Prostate Hypertrophy (old man disease at 22, right?). I had conjested sinuses since childhood (mouth breather), around 12  years old I would wake up because I couldn't breathe from all the dried mucous in mouth and throut. (before we knew about obstructive sleep apnea). Later on, joint, back, muscle pain. I once made a list of 18 different symptoms, all considered a part of growing old or smoking or alcohol, but I hope you get the idea. They all went away just from the Gluten Free Diet. I was on Prednisone from 2012 till last February. Turns out that pain was from vitamin deficiencies and if I take them to supplement my diet I have no pain. To support getting off prednisone my doctor prescribed Tramodone (synthetic opiod) for the pain. And it took that, plus aspirin or advil, to control the different kinds of pain. That lasted 8 days, until I went back on my 12 daily vitamins and minerals and stopped needing the Tramodol. I don't know which supplements made the difference because this was a recent discovery. I do know that I needed 30 mg a day Prednisone pre-GFD and less than 10 mg a day on the Gluten Free Diet.

My father (RIP), older brother (RIP), younger brother and son all need CPAP. I don't. After 63 years I became a nose breather. Dad and Alan both died after they got septicemia after intestinal surgery and the stitches would not seal because their intestines were like lace.

So, make this Gluten Free Experience a family affair and see what happens. You will go though a mourning experience but you won't regret it.

By the way, I still smoke a pack a day.

 

[Rebecca129]

Thank you so much for sharing your story and for the advice i really appreciate it! I agree we will all go wheat free so he doesnt view it as a punishment.

[Beverage]

On 6/18/2021 at 1:26 AM, Rebecca129 said:

Thank you so much for sharing your story and for the advice i really appreciate it! I agree we will all go wheat free so he doesnt view it as a punishment.

I totally agree with that decision.  I found it very very hard to keep my kitchen free from cross contamination without doing that.

Also be aware that 1st degree relatives will need to be screened, and their doctors made aware of a relative with Celiac's.  Here's some info from the U of Chicago, the leading Celiac's research univ:

https://www.cureceliacdisease.org/?s=relatives

 

Here is what is says about who else should get screened:

Those who fall into the following categories should be tested for celiac disease:

Children older than 3 and adults who are 1st-degree relatives of someone with celiac disease

Persistent miscarriages or infertility

Type I Diabetes Mellitus

Autoimmune Thyroid Disease

Irritable Bowel Syndrome (IBS)

Asthma

Multiple Sclerosis

Primary Biliary Cirrhosis

Down Syndrome

Turner Syndrome

William’s Syndrome

Hashimoto’s Syndrome

Graves Disease

There are many other symptoms that could indicate the presence of celiac disease, including persistent gastrointestinal symptoms, bone density problems, dental enamel hypoplasia, fatigue and others. If you’re concerned about your symptoms, ask your doctor about testing. July, 2012

[Rebecca129]

Thank you!

 

so should i wean my 5 month old as normal and introduce wheat etc? And not get him tested until after 3 years old?

 

also how risky is cross contamination? My son with celiac also has a peanut allergy and i find myself more neurotic about the celiac! What is the ‘permitted’ level? Would a teaspoon of soy sauce for example in a dish cause a reaction? I am just thinking out loud as i dont want this to overtake our lives. Or if he mistakenly ate a breadstick or crumb or something at nursery! Does it undo all the hard work the minute a crumb is detected? Or is a massive reduction/95% eliminatoon good enough?

 

Anyone know how long on a gluten free diet it will take to see results? My toddler is having loose bowels with undigested food and i am keen to see them firm up so i know he is absorbing nutrients better.

 

i am irish and i have been told it is more common in irish families so i would bet it is on my side, and i potentially have it too! Im hoping to be tested this week x

[Beverage]

 

Look in the articles section in here, there is a lot of great info, especially "gluten-free Diet 101"

For your 5 month old, I'd talk to a good doctor about what to do. I have read a few articles about exposing babies early to gluten...I can't recall exactly what it was, to do it early or to delay it. You'll have to talk to your doc, but read up on it, as most docs are not up to date on anything to do with Celiacs (from my experience).

A crumb the size of a small freckle on your arm is enough to cause a reaction for me.  The doc that diagnosed me said to treat cross contamination like a peanut allergy, and I'd be fine.  No, it's not like a peanut allergy, there would not be an anaphylactic reaction like that, it's just that for many, a very small amount causes a reaction.

For a Celiac, the "permitted level" or your goal is ZERO.  Soy sauce is made from wheat, contains gluten, and cannot be consumed by a Celiac, not even a teaspoon, not even a dash, nothing.  Throw out all your soy sauce and replace with Tamari (wheat free soy sauce).   Check all your condiments carefully. I don't eat it unless it's marked gluten free, and I prefer certified gluten free if there is a choice.

When I was first diagnosed, I went through my whole kitchen and tossed or gave away everything that was not marked gluten free. And I tossed anything marked gluten free if it contained oats (some celiacs react to oats the same as wheat, etc; also oats is a huge cross contamination problem because of how it's grown and processed, I eventually was able to reintroduce oats, but only what is called "purity protocol" oats, but best to not eat at all until healed so you can tell if it's an issue or not).

I also got rid of all appliances and cooking pots/pans that have non-stick, as that can trap gluten. Also replaced toaster and waffle maker.  Cleaned all stainless steel pots/pans that are NOT non-stick with scouring powder (Barkeeper's Friend) and washed thoroughly.  Cleaned oven, cleaned all drawers and cabinets, wiped everything down with paper towels, tossing regularly, wiped all knobs, ran all plates and utensils through dishwasher. Tossed all wooden spoons and sponges.  Got new sponges.

Check all new packaged food purchases carefully, there are some that can be cross contaminated because of how they are grown, transported, or processed.  Surprising to me, was beans, as they are often crop rotated with barley. For canned beans, I use Bush's, which are marked gluten free.  Also check rice, I use Lundberg, marked gluten free.  Sign up for newsletters on sites for food you might use regularly and they often provide good coupons.

Check all vitamins. 

Then I moved onto bathroom, tossed all skin and hair care items not marked gluten free and replaced.  No, you don't absorb gluten through the skin, but you do scratch yourself and maybe eat something, or wash your hair and the suds go down your face.

Checked all medications (this is hard as they are not marked), you might have to contact manufacturers.  Make sure pharmacy has info that this person has Celiac's, and make sure you are asking about gluten in any prescriptions every single time. 

I was able to check out tons of gluten free, whole 30, and paleo cookbooks from my local library. I photocopied good recipes, and this saves a ton of money from buying all these books.  I realized that a lot of the "gluten free" recipes were full of processed starches to replace wheat flour, and were worse than gluten foods as far as nutritional content. So now I lean towards whole 30 and paleo, "whole foods", but I do like waffles or pancakes about once a week, gluten free of course.

Just go one thing at a time.  This all took me a few weeks, and then kept finding little things here and there for about a year. Start with the obvious stuff.

My partner has gluten sensitivity, possibly NCGS, but he continues to eat gluten. So he does have a toaster and a stash of crackers and junk in the garage. I also allow gluten beer in the fridge and to be drunk in the house, but he is very careful, ait's not like crumbs, so easier to control.

 

[Rebecca129]

Wow thanks! I have gone so far and got toaster bags etc but hadnt realised the extent of the risk and to replace pans etc! Thank you for all your advice and time spent replying! X

[Wheatwacked]

14 hours ago, Rebecca129 said:

Anyone know how long on a gluten free diet it will take to see results?

In 1976 my 6 six month old was on Nutramigen for 6 months. Grew up to be a professional life guard.